Anyone else have a Redundant / Tortuous Colon?

I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!

I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!

Hello Jayne,

I was diagnosed with a tortuous colon, earlier this year,
after many tests (to rule other things out), and *finally* a colonoscopy.
My doctor did not use the phrase "redundant".

My GI doctor recommended a low FODMAP diet,
five months before the procedure, and strongly reminded me after the colonoscopy,
that it was important to continue the diet.
So I might have been on the low FODMAP diet for a bit longer than you.

The worst part of the tortuous colon for me
was the pain part, as food travels through the gut.
That would keep me up at night, affecting sleep
so the next day's focus and productivity were affected.
I've lost weeks to this issue, too.
Also, with pain, if doctors suspect a mystery GI issue,
you have to be *very* careful with pain relievers.
(Ex. aspirin can worsen ulcers, etc. The Mayo clinic already has an article on this)
This is really important, until they can figure out the issue.

I *believe* the condition caused both sharp pains and dull aches,
for several years, which made diagnosis by my general practioner difficult.
Ultrasounds came up negative, but I think all doctors should do this,
to rule out other things. The pain wasn't that bad, at first, so I just tried
my best to ignore it.
As the pain got worse, and was making me miss a lot of work, in late 2018,
this was when I started really trying to get an answer why the pain was there.
I also had mild constipation, most days, in those months, but it doesn't sound like it was at the OP's level.

***The single most important thing my GI doctor has done,
was encourage me to see a psychiatrist.***
This was more important than even the diagnosis!

Because the psychiatrist prescribed an earlier type of drug,
called Amitriptyline. It's an antidepressant,
but it also attacks the enteric nervous system (the ENS, it's in your gut).
The first night I took it, I was knocked out for about 12 hours, (on a 25mg dose).
Later, my psychiatrist told me this was a *strong* reaction, to such a low dosage.
but the next morning, the pain level was halved (4-6/10 => 0-3/10), and more importantly,
the *areas* of pain shrunk down to ~70-90% of the original pain area.
Basically, I could function again, for most days of the week.
Enteric nervous system and amitriptyline, seriously, look them up.

I believe the best treatments could be related to
what caused the tortuous colon in the first place.
I have suffered from depression, anxiety, sleep issues, for many years,
but at this point, it's like the chicken and the egg.
Was the chronic pain the stressor to help cause the mental health and sleep issues
or was it the other way around?
I don't know, but I know Amitriptyline helped me get my life back.

Again, my constipation doesn't sound as bad as what you are going through, Jayne,
but I think with constipation, if the muscles in the gut
randomly tighten the wrong way around one (of our too many) bends in the colon,
this could cause hard-to-predict constipation or uneven absorption of water.
In theory, helping the nerves *around* the gut, from overfiring,
may help avoid as many muscles over-tightening, which could help reduce the chance
of constipation around the bends of a tortuous colon.
BUT I AM NOT A DOCTOR.

For the low FODMAP diet, or diet in general,
(or what happens after I put stuff in my mouth),
here are my thoughts:

---It is more important to eat *something* than to religiously follow such a
restrictive diet.
(Ex. Garlic and onions are not allowed in the diet,
but they are used in small concentrations in many seasonings in many foods).

So I'll eat food with *tiny* concentrations of unallowed ingredients,
not on the low FODMAP diet, in at least one meal of the day, as a cheat.
When I first started following this diet, I found I wasn't eating *enough*,
because I was so afraid of what I could *not* eat...
New food (with fiber) and water can help push the old food through,
so make sure you are eating enough to begin with. But still remember moderation.
My grandma was kinda right...

It's much better to think positively, about what you *can* eat, than what you can't.
So you can proactively find *more* meals to eat, for a more diverse diet.
To show you, I will first list what I regularly eat/drink, before the nono's:

------Fresh baby spinach leaves daily (*small* amount of leaves as a stabilizer, if necessary)
===>>> regulates amount of fiber (remember, not too little, not too much).
Keeping a paper towel inside the plastic box helps them last longer.
Also, the "fresh" part makes it easier to inspect the food, for bad leaves.
I bet some folks use kale, the same way. The dark leafy greens are healthy,
but some of the most difficult vegetables to clean effectively (i.e. remove pesticides or excess fertilizer (fertilizer which could still be poop)).

------Small daily amount of almonds or peanuts
===>>> I think *chewing* tough foods more thoroughly can help avoid pain, later on. Mechanical digesion, right?
But to be fair, I think some folks on the low FODMAP diet avoid nuts entirely, just to be careful. For me,
they are just too damn healthy to quit.

------Meat. A lot of meat is allowed on the low FODMAP diet.
I like baking fish or grilling chicken. No breading, of course, with this diet.

------Eggs

------Pedialyte or some electrolyte solution. Frequently.
===>>> I can't stress this one enough. Drinking water seemed to be the only
easy way to avoid pain, for me, for months. A colon with extra bends means
that water can get absorbed *too quickly* by the colon, causing portions of the stool
to harden earlier on in the tract. This is bad. Try to drink plenty of water
*with* the meal, not all at once, before or after the meal.
Sometimes, I sip a watered-down broth, just to be safe.
Beef broth has enough protein, for it to be worth it.

It is important to note, in most cases, as long as you don't have high blood pressure (hypertension),
it is safer to consume *too* much salt, than too little,
within reason (less than 7g / day). Healthcare Triage (on youtube) has at least two videos about salt. This doctor and his researchers are thorough.
The above opinion of salt, specifically sodium, is still contended.

But "Today I Found Out" (who does excellent research, especially if Daven
Hiskey is involved) agrees with the Healthcare Triage doctor, Dr. Aaron Carroll,
about salt in their youtube video, as well.
***Reading research studies is the best way to be sure though.

Suffice it too say, I listened to everyone saying:
"Drink more water" and
"Eat less salt"
But I think following these two pieces of common advice,
lowered the salt concentrations in my body, to dangerously low levels.

Find a brand you like, (for me, it was Pedialyte) then try to get the
powdered form of it, to hopefully save money.
I think the correct understanding of salt/water intake
in the GI tract is a critical point for people who have a tortuous colon,
but I don't want to get too far off topic.
Just make sure the brand has some *potassium* in it, not just sodium,
and that the solution is not *too* sugary.

Here's what I had to limit:
------Although many cheeses are allowed on the low FODMAP diet,
I had to reduce cheese consumption in order to help prevent
constipation.
------Although potatoes are allowed, I shouldn't eat too many potato *chips*.
It's convenient, but the grease, the lack of nutrition or fiber doesn't help.
------Greasy foods, in general. I use some olive oil in baking,
but honestly, that yellow/orange grease is the stuff I'm limiting.
It helps avoid the most common issue (acid reflux) in the *upper* GI tract,
but I think it also helps me in the intestines, too.
------Sugary foods / Acidic foods. (Ex. Soda, orange juice, etc.)
High fructose corn syrup is in a lot of things, but you gotta avoid it
in the low FODMAP diet.
------Apple juice is in a lot of other juices! I drink a *small* amount of
cranberry juice, just to get some vitamin C naturally, but to get it, without apple juice
and low sugar, in the US, I have to go for a diet Oceanspray cranberry juice
------Absolutely no Belvita breakfast bars. For some reason,
I consistently had discomfort, no matter how well I chew them...
Once I ate at least 3 or 4 of the packets (12-16 bars), and I was on the floor
in pain, unable to walk. Lots of sugar from syrups, and hard grains...

*Walking* and light physcial activity helps!
It really does.

This post was probably too late to help with your decision, Jayne,
but I hope it helps someone else later.

The low FODMAP diet is so complex, with the diversity of foods on/off the list and the *amount* of a certain type of food allowed,
that I am probably going to have to develop a meal plan soon, to reduce stress and for my safety.

Thanks,
Jack

Hi @jamierr, welcome to Mayo Clinic Connect. I see you are having many bowel problems at the moment. This is a great discussion to be a part of since there are so many members contributing.
Have you touched based with your physician who prescribed Picoprep? Did you inform them that it wasn't working?

There is a medication designed specifically to target motility problems/chronic constipation. Prucalopride which goes under the name, "Motegrity" in the U.S. and "Resotran" in Canada. My gastroenterologist prescribed a two week supply to try. I have not filled the script. Ask your doctor what he thinks about you giving this drug a try.

I was recently diagnosed with a Tortuous colon when I went in for a colonoscopy to check for any issues as I have been having many bowel problems for many years now. To be specific, I have a mobility disorder which supposedly us why I don't have regular bowel movements, I have an inability to completely empty my bowel which then results in faecal incontinence (leaking of stool). My Colorectal Surgeon has asked me to take Picoprep which is a bowel preparation, every Friday twice in the morning for three months, which hasn't made a difference at all so far and it's been over a month. I've tried drinking more water, taking stool softeners and osmotive laxatives, drinking Metamucil, exercising, and absolutely no difference whatsoever.
Has anyone out there had the same problems I have, and what did you do to resolve them? Because nothing I've done has worked.

Hi Amanda, Thank you so much for those articles! I know you were responding to "scottisfull" but it's great that you addressed my issues as well. I am going to ask my GI if she has read the new recommendations for IBS-C. I am working with a nutritionist as well and will ask her too. So far she has not recommended the FOPMAP diet for me as I am already on a Gluten/Dairy free diet and have lost so much weight. But I'm thinking now it may be worth the try. Anyway, thank you again for the great information!
Scottisfull - Hang in there! It takes a LOT of reading and investigating and dietary changes as well as the right medications to feel better. Will any of us be "normal" again? I don't think so, I think this is life changing. BUT, we can still live a good life! I for one an working on it. :o) Hope you have a good day

Hi @scottisfull, And welcome to Mayo Clinic Connect. I see that you are trying to determine if the tortuous colon is related to or complicating your IBS-C. I found a few articles that you may be interested in that suggest that many of the symptoms of a tortuous colon are similar to those of irritable bowel syndrome (IBS). By definition, IBS is diagnosed when there is no structural abnormality (or visible inflammation or injury) and thus IBS and tortuous colon are considered two separate health conditions.
Tortuous colon and IBS - https://www.verywellhealth.com/tortuous-colon-and-ibs-4115904

This journal published an article that sounds very similar to what you are experiencing with both TC and IBS-C.
Hiding in Plain Sight: An Unusual Cause of Constipation - https://journals.lww.com/ajg/Fulltext/2017/10001/Hiding_in_Plain_Sight__An_Unusual_Cause_of.1418.aspx

Did your second GI physician suggest any medication, remedy or surgery for your issues?